[susieParticipant]

I know a lot of people have moved to facebook. I don’t have an FB account and neither do I really want one. It will be such a shame if this forum disappears.

[susieParticipant]

Hi, I think they’re looking to move this forum to Health Unlocked aren’t they. I had a message from Kyle a while ago, telling me about it and when I told him I’d prefer to stay on this forum, he told me they’ll keep it for the time being and review in 6 months. Hope I’ve got that right.

I’ve had a look at Health Unlocked and don’t particularly like it. Don’t know if either of you have looked at it.

Happy New Year

susie

[susieParticipant]

Hi Greg

The only thing my hospital does is, if you’re on the haematology/cancer unit for more than 2 hours, you can pay £3 and get a password and they let you out of the car park.

I must sound awfully mean and I don’t mind paying for the clinic appointment, but my point is with 2 visits for bloods together with the appointment would cost £8. Next treatment for me I’ve been told, will be weekly Velcade which will mean a weekly charge of £5.50. ! I just feel its out of order, and what choice do we have.

susie

[susieParticipant]

Have just seen your update Andy and was about to reply.

My, you have been through the mill. You’re an inspiration Andy, especially to the newly diagnosed. I remember your help to me at the start of my journey.

I wish you the very best. Keep up the good fight.

Take care xx

[susieParticipant]

Hi Andy

How nice to hear from you. How are you keeping ? well I hope.

My post should have read no activity on my scan. My consultant told me thoughts have changed and they don’t do anything until PP’s reach 50 then they do a bone marrow and go from there.

Are you still on pomalidamine?

Best wishes

susie

[susieParticipant]

So very sorry to read of your husbands passing. My thoughts are with you at this very sad time. x

[susieParticipant]

Hello Helen

So to hear of your problems. I do hope you’re feeling a good bit better. Have they blamed the ixazomib ?
It will be such a shame if it is found to cause problems because it saves having to attend a hospital so often for Velcade.

I’m at Wycombe Gen so as far as I understand it comes under the Thames Valley Network from the Churchill. You’re in good hands there.

All the best Helen

susie

[susieParticipant]

Hi Les

I’m reading your posts with much interest. I’m relapsing at the moment and have been told I might well be on the regime you are, Ixazomib, lenilidimide, and dex. I’ve had Revlimid before so I know what to expect from that, but I’m interested in how the ixaxomib affects you. There is a big but and that is my consultant seems very cost conscious and ixazomib is extremely expensive he says.

I wish you the best

susie

[susieParticipant]

Hi Andy

Nice to hear from you. It seems many of the old posters have gone elsewhere, as they don’t input here much any more. I hope you are keeping as well as possible.

I spoke to my consultant yesterday about stopping/reducing the Zometa. He said the reasons its given continually is that it interferes with the actual myeloma cells thus having an anti myeloma effect. True or not I don’t know but he’s agreed to miss a months infusion. I do wonder if I wasn’t drinking enough though and that caused me to feel unwell.

Best wishes

susie

[susieParticipant]

Thanks Jan. Gosh 5 years on Zometa. With me at the start of my journey, I didn’t have any lesions so I was lucky. I do have a very painful lower back but they’ve told me it’s wear and tear. ie vertebral slip caused by slipped discs.

I have my appointment this afternoon so we’ll see what he says. I’d be happier having it 3 monthly but whether he’ll agree I don’t know.

I hope things go well for you.

Best wishes

susie

[susieParticipant]

Hi Stanley

Thanks for your input. Having read some of the myeloma beacon articles. I may see if my consultant would agree to 3 monthly infusions. I’ve seen that some medics say one thing and others say the opposite. I know my dentist says Zometa stays in your system for years, if so why continue if its not necessary.

Thanks again.

susie

[susieParticipant]

Thanks a lot David. I’ll see what my consultant says but I do want to stop it. Apart from anything the thought of osteonecrosis gives me nightmares and I’ve become obsessive with mouthwashes.😀.

All the best

[susieParticipant]

Hi David

How interesting your doctors are saying there is no benefit in giving Zometa for more than 2 years. May I ask where you are being treated ? I shall be telling my consultant next week that I don’t want to continue with it. It seems the hospital I am at gives it indefinitely!

Thanks so much for your reply.

Best wishes

susie

[susieParticipant]

I was on the Myeloma X1 trial on Revlimid. From about cycle 3, I had tongue problems. The right side of my tongue felt as though I was recovering from a dental anesthetic. It was that feeling you get when a local anesthetic is wearing off. My consultant thought it rather amusing ! I didn’t and I thought it could be a form of neuropathy. It went when I finished treatment. I also had bad leg cramps and still do get it though not as badly.

Best wishes

susie

[susieParticipant]

Thanks for your replies guys. I’m not going abroad in September just to Cornwall. Just wondered how others cope if they go away whilst on treatment. And if meds are stopped while away.

Best wishes

susie

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